Posted on Leave a comment

Thriving With Sight Loss, A Talk With Ed Henkler

Cover image is described in the body of the post.

Editor’s Note:

Mahatma Gandhi once said, “The best way to find yourself is to lose yourself in the service of others.” Today’s featured guest for this month’s Cane EnAbled segment, Social Entrepreneur and Creator of The Blind Guide, Ed Henkler, personifies Gandhi’s sentiment. I recently had the pleasure of meeting Ed and was immediately taken with his passion for those who are blind/visually impaired. Ed’s advocacy journey began with his mother’s sight loss (later in life) and today he works tirelessly to help people within the blind community to thrive. Bold Blind Beauty’s Nasreen Bhutta, sat down with Ed to discuss his journey and his work. ~Steph

Interview with Ed Henkler and Nasreen Bhutta

Interview Transcript:

Nasreen:

Welcome to Bold Blind Beauty and Beyond Sight, an online community and magazine. I’m your host, Nasreen, and today we’re going to be featuring our Cane EnAbled segment, so in addition to celebrating all things related to the white cane, including safety and usage, personalization, this monthly series also shares broad perspectives in the field and parents of blind and visually impaired children, advocates and exciting news on the technology front. Cane EnAbled is published on the fourth Monday of each month.

Today we have a special guest with us, who is thriving and striving. We are going to be speaking with Mr. Ed Henkler, who is a social entrepreneur and advocate and who is very passionate about improving quality and life and employability of people who are blind or visually impaired. His website is TheBlindGuide.com. So if you want to learn more about Ed and what he does, you can visit TheBlindGuide.com. Good morning, Ed.

Ed:

Good morning, Nasreen.

Nasreen:

Thanks for being our featured guest today on Cane Enabled. You’re a social entrepreneur and advocate and we want to learn more about why you are so passionate about assisting folks with disabilities to thrive. For someone who’s not part of the community, why do you have such passion?

Ed:

In the early 1990’s my mom called and told me that she had macular degeneration. At the time, I had no idea what that meant. I knew degeneration was a bad thing.

So she explained to me what was going on and at the time it was only affecting one eye. At the time there were no treatments for it. We have some options today. So she was still able to maneuver in society; she still had one solid eye. But I told my wife, “We’re going to have to do something. When her other eye goes, we’re going to have to react quickly.”

We were living in the suburbs of Philadelphia; my mom was living in Florida and it was five years later that she called and told us that the other eye was starting to go and we had her moved within a week. But it was a very disconcerting time, obviously for her, but also for us. We knew nothing about blindness. I can’t say that I even know that I had come across somebody with a cane, or somebody who was blind. I believe we’ll come back to it later, but I do have some personal experiences, but I am sighted and have 20/20 vision.

So we moved my mom up, had no idea what to do, and there was really no accessible Internet at that point. So you couldn’t just go on and look for associations for the blind. But we stumbled across a group that was in our home town  and in the space of one to two years they restored her independence. I saw her travel further than she did before losing her sight. She traveled outside the country for the first time. She became a spokesperson for the Association for the Blind, something she had never done before, and I think, all in all, not only thrived, but probably lived her life better than she did before vision loss.

Nasreen:

What were some of the challenges for you, Ed, as your mother was losing her sight? How did you cope with those challenges?

Ed:

I don’t think I realized at the time what it was like to be a caregiver, so initially we just jumped in and tried to do everything we could to help her. I think we did a lot of the wrong things from not knowing how to guide somebody who’s blind, letting them grab your elbow, that type of thing, keeping them in control, to not understanding what she could and couldn’t see.

One of the stories I’ve told a lot of people is, as her disease progressed, she couldn’t tell who I was unless she happened to know what clothing I had on. Obviously no central vision, but I’d see her say, “look; there’s a dime on the floor.” That used to be maddening to me. How can you see that tiny little shiny dime and not see your son, who’s only six feet tall? How to get through that, how to help her in a way that let her remain independent. That was certainly our role, and it was her goal. I had to learn a whole new language. We had to learn how to describe directions to her.

I think the other piece is there was some sense of frustration. My dad had died early and now my mom couldn’t see, and I came from a family where my grandparents all lived into  their late 80’s and 90’s. Suddenly, very early in my life, I was caring for a mom that couldn’t take care of all of the things in her life and didn’t even have a father around. So frustration, concern, fear, not knowing how to deal with her, having no idea what was possible for her after her sight was gone… The list is long.

Nasreen:

Do you think you’re better because of it today? Is that the passion that drives you?

Ed:

I think I’m dramatically better. Clearly what my mom was going through was worse than what we were going through. I wouldn’t pretend as a caregiver that my life was the same as hers. But I had been somewhat blessed in my life. I spent two years in the Navy, I spent twenty years at work, I had always been employed, really hadn’t had any significant challenges, and I think I was a bit smug. Not probably in a bad way, probably not even atypical from many other people, but it’s easy to say, “I understand other people have challenges,” but when you haven’t confronted them, or maybe they haven’t hit close to home, I don’t think you understand as well.

I have learned since, number one, how hard some people are trying with very little success, how hard it is to navigate a world when you can’t see it, a lot of things like that. So it’s made me sensitive to people’s disabilities in general, and then that has carried over to other people that are challenged, whether it be transportation challenged, employment challenged, whatever it may be, and I was not that way before. I think I may have said I was, but I wasn’t. 

Nasreen:

You are also coach and mentor, and an advocate. Can you highlight some of those areas for us?

Ed:

Before we talk about the community of people who are blind, and that was back when I was working for the pharmaceutical company, this was probably in the early 2000’s, I had a woman who was working for me and she told me about this new group being formed called the Women’s Mentoring  Network, and she said, “you should attend.” I think I’ve mentored throughout my life. I was a Navy ROTC instructor in my mid 20’s. At that point I was trying to help younger people than me, although I was pretty young at the time. I was trying to help them navigate college, navigate deaths of parents, breakups with girlfriends or boyfriends, all that type of thing. So I mentored early on, and then she wanted me to join this Women’s Mentoring Network. I said, “well, think about the name. I’m not a woman; I wouldn’t belong there.” She said, “no, there are lots of men that show up.” “Well, that seems fair, so I’ll go.” I show up at the meeting and there is one other male there and about thirty women. I said, “I don’t see all the men.” She said, “well, I might have lied.”

[Ed and Nasreen laugh.]

Ed:

But I became very involved with it and I think maybe that was the first step I took towards understanding others. It’s not fair to call women a minority because they’re a majority, but they’re often treated as a minority. And I started recognizing the challenges they had, particularly younger women who have families, trying to raise a child, trying to work, trying to do everything. But I think that’s when I first really understood that mentoring role and became truly involved in that.

Since then, what motivates me with people who are blind is many people know there’s a statistic that’s thrown out that there’s seventy percent unemployment for people who are blind. And there’s a lot of noise around that statistic. There’s some that say it’s lower; the point is, it’s a very high number, and I think if you look back far enough, maybe twenty, thirty, forty years, maybe there was more reason for it; probably still not, but at least more understandable. With today’s technology, it’s completely inexcusable. I find no reason for the unemployment to be any different amongst people who are blind versus someone who is sighted, and certainly not a factor of ten. So that’s what’s gotten me involved in using the same techniques I was using with someone who is sighted to help them realize their potential and help them navigate corporate uncertainties and maybe my primary theme, which is to understand what drives you.

What’s your passion? And if I can go into a little bit of a story there, when I used to be asked what my passion was, I would have told you that I was passionate about strategic planning and trying to help senior decision makers figure out what they want to do, and as I look back, that was a skill. That wasn’t the passion. I wasn’t investing any money in that. I didn’t really care about it; it was just something I did well and it was what the company paid me for. It took unemployment, or technically early retirement, for me to finally realize that what I was passionate about was helping people who are blind thrive. And I will say it wasn’t me who figured that out; it was others who kept observing that that everything about me changed when I talked about people who are blind.

I finally told my wife, “I think the universe is yelling at me and I just need to adjust my approach.” And that’s when I really switched hard over into this concept of prevention of blindness and enabling of technology to help people who are blind thrive. But it’s really the same thing; it’s uncovering what you believe in, what you’re passionate about, and then finding out how to present yourself and sell yourself in a way that makes you a success.

The final piece, I think, perhaps, of this answer is, I’ve been mentoring a young man for at this point, probably four years. When I connected with him, he was one course away from graduating from Princeton. So this was a man who was completely blind, had a full scholarship to Princeton, within one course of graduating and had been that way for two years. Two years without graduating, with only one course to complete, and sitting at home with his parents, unemployed.

It was his parents who begged me to mentor him through the fortune of a strong network. I was able to connect at the convenience of his school, who simply loved this young man and wanted him to come back. Within a day of us agreeing to work together, I said, “you need to get on the phone immediately. The college wants you back; they want you to graduate.” Within six months, he was graduated from Princeton. So wonderful accomplishment there.

I helped him find an internship in an accounting firm, which was where his skills were, and since that time, he has been promoted twice he is about a third of the way through a Masters degree in taxation, and while he still lives at home, his life has completely flipped. He’s a very happy, confident person. He is moving gradually ahead of his peers, sighted or otherwise.

Nasreen:

Sometimes it just takes one person to make a huge difference in someone’s life and I think that’s exactly what you’ve done.

Ed:

Nothing could make me feel better. He’s not my son, but there’s some element of parental pride in what he’s accomplished.

Nasreen:

Absolutely.

Ed:

His parents and friends are so appreciative also.

Nasreen:

You were also part of the Igniting Power Initiative, and also, on your website, I noticed there was an article about augmented reality. How do you think augmented reality can help folks with visual impairments?

Ed:

As with any technology, opens up a lot of possibilities that might not be accessible to them just through what remains of their senses. So it’s been used in a number of different ways. The first time I became aware of the term was a Startup at the University of Pennsylvania that was developing beacon listening indoor navigation. It was using the environment to help people who were blind understand where they were within that environment. That would create a picture that could be prevented visually to somebody with low vision or audibly to somebody who had no vision.

So for somebody who doesn’t understand, augmented reality just takes reality, the world that anyone who is sighted sees, and it overlays content on top of it. The simplest form of that might be some text, or an arrow blinking, “here’s the exit.” But it can go into incredible depth. It augments what anyone can see regardless of their level of vision. Where that has gone since then is dramatically further. There are many smart canes. But all of those take signals from the environment and augment them with additional information to help somebody, in this case who’s blind, navigate the world. One of my favorite ones is called Foresight Augmented Reality and it’s down in Atlanta and in a couple of other places.

The back story is funny. A sighted person was on a cruise with his friend who is blind, and he said in the course of a week he got so tired of taking his friend to the bathroom he said, “there’s got to be something different we can do. This is ridiculous.” So they went home, and using Beacon, and that’s not ideal but it is the current state of the art, using Beacon, you can get a person to a very specific location and then give them information about that location. In one example, he shows a person in Downtown Atlanta near Georgia Tech going to a bus stop. Aw he approaches the bus stop, the app tells him, “you are at the bus stop.” It tells him as he approaches, and then it says, “you’re here.” And then it says, “The next bus that comes will take you to…” And then it announces when the bus gets there. And then it tells him during his journey where he is and what’s around him. That’s a much more advanced form of augmented reality where without all of that, at best he might have a sense of where he is, but this is completely tailored based on Beacon.

So if you go to a restaurant, you can get the menu read to you. It makes him, with slight delay, every bit as capable as someone who’s sighted, and it’s without the assistance of anyone else. It’s just his app, providing the same information that a sighted person garners through their vision.

Nasreen:

And wouldn’t that be a perfect world, where the blind were able to navigate without assistance at all from anybody?

Ed:

That’s something, Nasreen, that I didn’t understand before. To me, if you’d gone back to when my mom was losing her sight, and probably for many years afterwards, I would have said, “well, she could just grab somebody’s arm and she can get there.”

And I think that goes back to a general accessibility issue that I know I didn’t understand, and therefore we’re going to say that many people without disabilities don’t understand either. And that is, if I get a new job, or if I go to a new place, I don’t need to ask for accommodations. I just go there and I’m able to access it. For somebody with disabilities, including blindness, to have to ask does something to you. It makes you feel less empowered. It isn’t that the person can’t react quickly; they can’t put in a ramp if they’re in a wheelchair; they can’t add Jaws to your software if you need to access it. It’s just the fact that you have to ask. It makes you at some level a second class citizen, even if the person putting you in that position doesn’t recognize it, and they probably don’t. They don’t view you as second class; they just view you as someone who needs something and they’re going to get it for you. Try to put yourself in the position of the person who is blind. How frustrating to always have to ask for accommodations? How can that not make you feel lesser?

Nasreen:

I was reading through your website. I was looking at some of the blog posts that you had up there. I was really intrigued by some of the information. One line in one of the blog posts kind of struck out at me. It was about achieving your dream job. So I have to ask. Have you achieved your dream job?

Ed:

Actually, I’m close. I wouldn’t say I’m there, and the reason I’d put it that way is, I love what I’m doing. For thirty years of my life I worked with companies where I was proud to say I was a member of the company and I thought we were doing important work, but I was a tiny cog in a lot of machines. And it also wasn’t my passion. They were just doing important work.

Right now I am doing my passion. I’m directly responsible for helping people, such as the young man that I talked about. I’m directly responsible for helping young start-ups try to bring technology to market that might not otherwise get there. It will seem selfish, but I have yet to match that passion with similar income. So I’m fortunate that my wife is doing a good job with it. And I certainly supported us for a long time, but that is a missing element. No matter how much I enjoy what I do, I need to pay bills. So this is the path I’m on.

For a long time I hoped that I could get money from the start-ups I supported, but it’s just become obvious to me that that’s never going to become my primary source of income, and I’m not trying to approach this more from a corporate level because there are companies that would very much like what I can bring them and the connections I can make with them and people who are blind.

I don’t want to join the companies; I want to support them and help them be better, and let them compensate me. So money isn’t everything and it certainly doesn’t buy happiness. Those are all true phrases, but it pays the bills. But I love what I’m doing and it’s allowed me to live in a location I love.

Nasreen:

The fact is that you’ve got a drive, you’ve got a passion, you’re striving and thriving through it to help and push along and you were mentioning about corporate. With the ideas and the social entrepreneurship and the advocations that you do, I can definitely see over time, especially in the upcoming few years, thanks to Covid-19, things are sort of going in a different direction. A lot more remote work, a lot more things are happening virtually. So there may be some great opportunities out there for you to connect with all the verticals that you just described that you want to tie together. We wish you all the best of luck in that and I’m sure there will be some great ideas and innovations coming out and I thank you so much for your time this morning.

Ed:

My pleasure, Nasreen.

Nasreen:

To find Ed’s feature, and many other great articles and innovative information, visit the Cane Enabled page in the Beyond Sight online community at BoldBlindBeauty.com. Thanks for listening.

Connecting With Ed:

Image Description:

  • Featured image is the Beyond Sight Magazine cover. A headshot of Ed is on the cover, he is wearing a business suit and tie. The masthead is teal with “Beyond Sight Magazine” in black text. The dot on the ‘i’ in ‘sight’ is the eye used for our 2020 Year of Vision Campaign (described HERE). There are 2 lines of black text that say “The Blind Guide.” In the bottom right corner is a teal circle with an illustration of Abby Bold Blind Beauty’s fashion icon who is walking with her white cane in one hand and handbag in the other. She is wearing heels and a stylish dress made of panels resembling overlapping banana leaves. The dress panels gently curve from her nipped in waist to just above the knee. She’s also sporting her signature explosive hairstyle and “Cane EnAbled” is in yellow text under the circle.